Tuesday, October 19, 2010

um...is it friday yet :)

So its been a week since Urijah was born and went to heaven. I think my nephew took a little piece of me when he passed away. His mommy and daddy are very strong and tell his big sister about him daily. Grandma misses him a lot, we talk about him daily in out house. I am afraid I will forget him and that scares me. I hope that never happens.

Tomorrow is my first appointment with my new neurologist for my Cerebral Palsy. I left my last one when he told me I had CP to just give up and deal with it. I am not one to have a pity party but sometimes it really sucks to have CP. I am hoping the new neurologist has ideas to stop my seizures and can help with my muscle pain. We will see...I will keep you posted

My OT has ordered me, my resting arm splints so I will be wearing those when I sleep starting Friday. I laughed and told her it was a good thing I sleep alone, those babies could do some damage if I hit someone in my sleep. LOL! Hopefully they will help my hands straighten out from their lovely fisted position and allow me to write and type easier and longer without pain.

School is getting really hard..We have a test everyday almost and my brain just doesn't process all this information all that quickly. I don't get any assistance for my disability, because I am to prideful as awful as that sounds (picture your 3 year old in that I can do it myself stage...yep I am still in that stage, thank you very much). I am starting to think I might need some extra help or a tutor or a new brain...hell I don't know.

Friday is my day off...so if anyone can make it friday already that would be awesome thanks!

love and hugs,


Wednesday, October 13, 2010

Forever Auntie's Baby Boy

Yesterday was the hardest day I have ever been through. My brother's son Urijah C. Negri was born and passed away on October 12, 2010. Urijah is the most beautiful boy I have ever seen and I know he has made the most beautiful angel now. I am so thankful I was allowed to hold him and give him a kiss goodbye.

Urijah had Digeorge Syndrome and heart defects....he was a fighter, he never gave up! I remember when my sister in law told me she said she was pregnant. I told her he was a boy and that he was going to be mine....she thought I was crazy for thinking he was a boy when she just found out she was pregnant, but I knew he was a boy and he was going to be Auntie's boy!

Urijah- Auntie loves you forever...You are in my heart forever baby boy!

Tuesday, October 5, 2010

some days are just plain rough

Today is one of those days when I wish I could have just stayed in bed.

School is getting really hard, and having learning disabilities makes it about ten times harder than it is for a "normal" person. I failed my last two exams and I have another exam that I am not feeling so great about on Thursday. So if you have some good luck wishes you can spare...please send them my way:)

I meet my new OT today. I am a little nervous. I have a lot anxiety about meeting new doctors, I get tired of feeling like a science experiment. We are going to work on my hands first, because they are causing me the most pain and interfere with my life right now.

My brain is so exhausted right now. I will update you later on how my appointment goes.

Love ya,